Almost Losing My Mother: From Doctor to Patient and Back Again

By Anne Louise Oaklander

We almost lost mother last week. When she came for Thanksgiving I noticed coughing each time she ate. Small discreet coughs, unremarkable, but to a physician an alarming signal that swallowing has weakened, permitting food to go the wrong way, toward the lungs. Each cough unremarkable, but signaling a potentially fatal problem. When I mentioned this and suggested testing, she flat-out dismissed me: "With so much else going on, I can't pay attention to every little thing." She handled most problems this way. At 84, she was in excellent health, still working as a medical school professor, writing papers, and teaching young doctors. After seeing children die from horrible diseases, most other problems do seem minor.

In old age, her major medical issue was worsening scoliosis that now distorted her spine, pressing on the nerve-roots to weaken her legs and cause pain. She needed a cane. This had developed over decades during which she brushed aside suggestions to seek medical evaluation. "Why bother to have an MRI; it will only show something they'll want to operate on, and I don't believe in that," she said.

Her crumbling spine was part of her osteoporosis. Growing up in Europe during World War II without much milk, she never got used to drinking it. She had fallen several times over the years with an ankle and three wrist fractures, all healed. The other ankle sometimes swelled, so for years she had been taking hydrochlorothiazide, a diuretic. When osteoporosis came to public awareness a few decades ago she began to take calcium, and later vitamin D was added to improve calcium absorption. Recently, she took four calcium pills a day. Falling was one of her few fears. She was otherwise fearless, intimidating generations of young doctors, not to mention her own physicians. She still called the shots.

When she elaborated that the experiments were taking plance in a hidden hospital annex, and that her dear friend Oliver Sacks was overseeing them, her delusional state was exposed.

On the phone after Thanksgiving I noticed concerning memory slips. She mentioned nonchalantly that "I was confused when your brother called -- I thought it was the middle of the night and something had happened to his boys." She noticed occasional eyelid drooping and got her ophthalmologist to test for myasthenia gravis, which causes weakness, especially about the eyes and face. When she tested negative, she didn't bother telling me or her internist about this; no need to bother him between her yearly visits. Her academic career continued.

It began to fall apart Christmas week. She fell while alone and was unable to rise for eight hours. An ambulance brought her to the hospital where she worked. No fractures, just dehydration, for unclear reasons. I was infinitely relieved but a few details nagged at my medical mind: Why had she been unable to get up? Why had she pulled the phone to the floor but not used it? Was this more confusion, perhaps early dementia?

In the hospital her voice sounded weak and nasal, so I asked them to test for myasthenia, not knowing she had already attended to this. She was discharged after a few days of intravenous fluids but remained frail. Her 90-year-old husband did more and more for her, ordering the walker she now needed, taking over the driving. He lovingly cared for her without mentioning her decline to the children. Colleagues at the hospital expressed concern.

Six weeks later she fell again and her husband couldn't lift her. Another ambulance to the hospital. This fall left her with an injured shoulder and even less mobility. My father had to help her dress, to walk, and to the toilet. She couldn't use her laptop and missed work deadlines. The internist was consulted and performed blood tests that came back abnormal. He apparently recommended hospital admission but she pooh-poohed this in no uncertain terms. Later, he explained apologetically: "You know your mother; it's hard to stand up to her."

The next day she became progressively quieter and did not eat or drink. When I phoned, her voice was so weak and confused that I could not understand her, and I wondered if she would make it through the night. At 4 p.m. she asked my father to put her to bed. He watched over her carefully, listening for each breath, sharing my concern. A visiting neighbor, a nurse, found her unresponsive and recognized critical illness. Another ambulance to the hospital. The end seemed near and the distant children were summoned. Remarkably, the next day, after IV hydration, she began to speak again, engaging her physicians in medical discussion and refusing several tests they recommended. She matter-of-factly discussed with my brother the artificial intelligence experiments being conducted on her, explaining this was why she was hospitalized.

When she elaborated that the experiments were taking plance in a hidden hospital annex on the other side of the picture on the wall of her room, and that her dear friend Oliver Sacks was overseeing them, her delusional state was exposed. Her lab tests showed shockingly high levels of calcium, up to 19.0 mg/dL (the normal range is 9.0 to 10.5) and vitamin D levels of 127 mg/dL (the normal range is 15 to 42). She was vitamin toxic and had likely been so for the last several months. As she weakened, she ate and drank less, but she carefully took her pills. These combined to send her vitamin levels spiraling up to life-threatening levels. Low potassium from the diuretic and not eating only worsened the toxicity. Since she hadn't seen her internist in over a year, her vitamin levels had remained untested. And when he checked them, her imperious manner and world-class medical reputation discouraged him from overriding her irrational refusal of care.

In retrospect, her decline was classic for hypercalcemia, not only the confusion progressing through delirium to stupor and toward coma, but also the weakness I had noticed when she coughed. Hypercalcemia contributed to the drooping eyelids, the nasal voice, the falls, and at the end, complete disability. Her high calcium had passed unnoticed during the first hospitalization at Christmas. Likely the doctors found confusion, weakness, and falls unremarkable in an 84-year-old and they did not look too hard for specific causes.

She responded dramatically to IV fluids, to stopping all her pills. She needed no other treatment -- not that she would have accepted any once she could talk again. When she went home a few days later, the Discharge Diagnosis read "Poisoning by vitamins, not otherwise classified." Her delirium lifted rapidly. The first day she came home, still very weak, she told us all about the hidden-laboratory experiments and insisted that some of this had happened -- "a lot of it at least." The next day she admitted it was unlikely that the hospital where she had worked for more than 50 years had a hidden laboratory. On the third day home she needed help bathing but used her walker unassisted. She had formed no memories during her delirium and made us recount every detail of those days. By the fourth day, she was largely independent and briskly dismissed my questions about the hidden laboratory. "I was ill, but that's behind me now." She phoned her editor to reschedule the delayed manuscript. The patient had faded away and she was a doctor once more. Everyone had attributed her decline to "natural causes" -- technically correct as she was taking "all natural" vitamins. It was not so much the falling but the fear of falling that nearly killed mother.